This is a patient registry for individuals with severe Von Willebrand Disease (sVWD), a bleeding disorder. The VWD Connect Foundation is creating a web-based database to collect information about people with sVWD, including their health history, symptoms, and lab results. This information will help researchers better understand sVWD and identify people who might be interested in future studies. You can join if you meet the diagnostic criteria for von Willebrand disease, specifically if your VWF antigen or activity is less than 20%, or less than 30% with significant bleeding symptoms that required hospitalization, surgery, blood transfusions, or a large drop in hemoglobin. The goal is to gather data for at least 5 years to support future research.

Study design

This is an observational study, meaning no interventions are given. It aims to enroll 400 participants.

What's involved

You will provide self-reported data or have registry personnel collect it. No clinical procedures, testing, or diagnostics are required for participation.

Compensation

Not stated in the trial record.

Follow-up

Outcomes are measured for at least 5 years, indicating a long-term follow-up for data collection.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.